university

Mrs. Sandra, I myself do not have E, but my daughter does (14yro). even though you two are 5 yrs apart she does the same thing. she wont tell anyone about having E. only 2-4 friends know she has it. she just have the VNS installed 3 wks ago today. when she went back to school kids were askng her what happend to her neck. her response was my cat scracthed me. I really dont have an answer to your question but i do have an question for you and this is the same one that i ask my daughter. "Why wont you tell people about your E""? is it the fear of being different? it shouldnt be cause you really arent. i dont know what type of seizures you have but i do know that beer, wine, etc can cause you to have a seizure. so would you rather tell people that you can drink because of having E or would you rather have a seizure at party after drinking a beer or what ever. then most kids your age will think darn she drank way to much and I would imagine that would create a whole new bunch of questions for you. to me being almost 40 yro, i would have to say just tell people that you have E and be done with it. they may treat you different at first but in the long run if you did have a seizure while in class, at a party, walking on campus or what ever then the people your with WILL know whats wrong and they WILL be able to help you. have a nice day.. again this is my .02 worth. scott

Hey Sandra, Boy do I know what your going through. At 25 and married I dont care so much anymore but the past 7 years. I faced the same concerns. I wanted to be able to have that glass of champaigne at my wedding. Or at 21 go crazy like kids do. Or even before then ;-) So I started asking my Nuerologist questions about it. But all I ever got was, "Its not a good idea" "I wouldn't recommend it" But he never would tell me what would actually happen to me. So I asked my normal MD who also said it wasn't a good idea, but told me kids will be kids and if I must try alcohol to make sure i'm with someone who cares about me, who's not drinking, so in case something goes wrong (like seizures or all the craziness that can occur) that they can get me to a hospital. So I new every time I took a drink. I was taking a risk of whats going to happen to me. I took Tegretol growing up FYI. After trying small amounts here and there. I always made sure to drink alot of water with it and not to ever get wasted drunk. I did notice that alcohol even in small amounts made me feel incredibly sick, gave me seizures, and migraine headaches. So I decided to call a Pharmacist because they're going to know what the chemical reaction is thats going on with the drugs and the alcohol and they told me this. 1. Alchol by itself is harmful to the liver. (This of course is more in massive amounts, alcoholism ect) But almost all seizure medications effect the liver as well. 2. The RPH told me that alcohol and seizure meds mixed together can make the levels of the seizure drugs in your blood go sky high. So lets take for example Tegretol XR which I take. On a level of 1-10 on the blood work you want to be somewhere in the middle. I normally range around a 8 and my dr says thats perfect. If I drink alcohol it makes the level go from an 8 to lets say a 12 or 13 maybe higher depending on the person and the amount you drank. But now you are in toxic levels. Which means Tegretol Poisoning. It can harm your internal organs, cause more seizures, and Liver failure is a big one. So is it wise to drink when you have epilepsy and are taking seizure meds. No probably not. Can it harm you? Yes it sure can. Will it? Who knows? I have had a glass of wine, I have had a beer, I have had a shot. But I never have gone past 1 drink at a time. Also, I almost always get drunk or at least tipsy anyways because I'm sure you have seen the little message on your medicine bottle, "This med can cause drowsiness, alcohol may intensify this effect." I get tipsy and dead tired. Was I ok afterwords? Sure. But I always had someone there watching out for me. Making me drink lots of water. Making sure I didn't mix my meds with the alcohol. And knowing when to stop me from drinking more. I chose to tell my friends about my seizures, just because I want them to know what they're dealing with. I didn't want them to be scared and I want to know i'm in good hands and will be taken care of. If you don't want to tell everyone your going out with about your epilepsy, then tell 1 good friend who will be there. Let them be the one to watch out for you. It's kind of like a designated driver LOL Except this is a designated watcher for an epileptic friend. :-) Well I hope that helped you a little. As for me. I just don't drink anymore. I choose not too now. I will occasionaly get a glass of wine if I am out to dinner or if I go out to a bar i'll order a drink and sip at it. I have learned to enjoy alcohol for the taste not the effects. So I only need a sip. Most of the time my husband won't even let me have that though LOL. Alcohol makes my seizures worse. So I just do with out most times.

if someone asks me why I don't drink I only say because I don't want to. That's my choice, not only because of my epilepsy meds but really how stupid people get when they drink. When WE drink it only takes a 1/4 of what it takes others to get drunk, plus we can get seizures. So no thank you I'll have a sprite.